April 19 | Food For Thought’s Unequal Healthscapes in California’s “Biohub”

Wednesday, April 19th
5:30-7:30 pm
Namaste Lounge

Hosted by the College Nine and Ten CoCurricular Programs Office, SJRC Assistant Director, Kate Weatherford Darling will present her research centering social justice and health inequalities in the discussion of biomedicine and US healthcare and policy. Asking the question: What would it take to build new California “healthscapes” (Clarke 2010) with visions of disability justice and health equity?

Unequal Healthscapes in California’s “Biohub”

California’s recent Tech Boom buoyed the Bay Area economy and transformed the political geography of the state and a global center of wealth. Venture capital / philanthropic investment along with public policies to promote “entrepreneurism” are rapidly changing the spaces, places of biomedical science and healthcare practice. In this talk, Kate offers an incomplete map of our unequal “healthscapes” (Clarke 2010), the cultural, economic and political terrains of health. Drawing on findings from her current and forthcoming research, she asks: What would it take to build new California healthscapes with visions of disability justice and health equity?

Katherine Weatherford Darling is Assistant Director at the Science and Justice Research Center and faculty in UCSC Sociology Department. Her research and teaching bridges Sociology of Health, Illness and Disability and Feminist Science Studies. Her current projects span diverse topics including: Post-Genomic epidemiology and HIV/AIDS science and health policy in the U.S. With UCSC and Bay Area collaborators, her new projects examine how the social and built environments of Bay Area’s tech and biotech economies are impacting the health of low-income Californians.

Flyer for Food for Thought

Flyer for Food for Thought

April 25 | Online Film Screening: The State of Eugenics

Tuesday, April 25 at 3:30 PST
What is the legacy of government sponsored eugenics programs? Learn more and join the discussion following a special screening of THE STATE OF EUGENICS on Tuesday, April 25 at 3:30pm PT presented by Facing History and Ourselves and Reel South.

Between 1933 and 1974, the state of North Carolina ran one of the most aggressive eugenics programs, sterilizing more than 7,600 men, women and children. This film follows the journey of survivors, legislators and journalists who insist the state confront its role in the tragic, forced sterilization of thousands of Americans thought to have “undesirable” genetics.

Duration: 90 minutes

More details are at http://bit.ly/tsoe2017
Promotional Video: https://vimeo.com/195666167

Further Reading:

2017 Los Angeles Times Editorial: California needs to do more than apologize to people it sterilized

2016 PBS: Unwanted Sterilization and Eugenics Programs in the United States

2014 Center for Investigative Reporting: Female prison inmates sterilized illegally, California audit confirms

2014 Press Enterprise: Female inmates, some in Chino, unlawfully sterilized

2014 California State AUDIT: Sterilization of Female Inmates Some Inmates Were Sterilized Unlawfully, and Safeguards Designed to Limit Occurrences of the Procedure Failed

2013 Center for Investigative Reporting: Female inmates sterilized in California prisons without approval

2013 Center for Investigative Reporting Video: Sterilized Behind Bars

 

Jan 25 | Against Purity

Wednesday, January 25, 2017
4:00-6:00 PM
Engineering 2, Room 599

Science and Justice Visiting Scholar and UCSC alum Alexis Shotwell, Associate Professor of Sociology and Anthropology at Carleton University, will be in conversation with Jess Neasbitt (History of Consciousness, UCSC) about politics, movements and ethics in her new book Against Purity: Living Ethically in Compromised TimesAgainst Purity proposes a powerful new conception of social movements as custodians for the past and incubators for liberated futures. Against Purity undertakes an analysis that draws on theories of race, disability, gender, and animal ethics as a foundation for an innovative approach to the politics and ethics of responding to systemic problems.

Jan 23 | Film Screening: KONELĪNE: our land beautiful

Best Canadian Documentary, Hot Docs 2016

konelineTRANSCENDENT… epic spectacle. […]She lets the camera hunt for art in every frame, mining veins of abstract beauty rather than sharp nuggets of political narrative”  Brian D. Johnson, Maclean’s

ASTONISHING, stunningly beautiful. […] Equal parts sigh, song and cry.”  Linda Barnard, Toronto Star

BREATHTAKING, gripping. […] Finds beauty in unexpected places.” David Perri, The Northern Miner

WINNER of the Best Canadian Film of 2016 at the HOT DOCS Intl’ Film Festival, KONELĪNE: our land beautiful brings its sensual and visceral ride to UC Santa Cruz:

Monday, January 23, 2017

Humanities 2, room 259  4:30PM

KONELĪNE Trailer: https://vimeo.com/180675200

Celebrated for using art to seek beauty and complexity where you least expect to find them, KONELĪNE (pronounced Ko-na- lee´-na)  is garnering rave reviews for its fair-minded and cinematically stunning exploration of northwest British Columbia and the extraordinary people who move across that land.  Set deep in the traditional territory of the Tahltan First Nation, KONELĪNE captures an epic canvas of beauty and complexity as one of Canada’s vast wildernesses undergoes irrevocable change.

Directed by award-winning filmmaker Nettie Wild, KONELĪNE delights in exploding stereotypes with scenes of breathtaking spectacle. Heidi Gutfrucht, both a big-game hunter and fierce environmentalist, swims her 17 horses across the unforgiving Stikine River. A Tahltan First Nation diamond driller bores deep into the same territory his elders are fighting to protect.  And a white hunter carries a bow and arrow while a Tahltan elder shoots moose with a high-powered rifle.

Cameraman Van Royko won the 2016 Award for Best Documentary Cinematography from the Canadian Society of Cinematographers for KONELĪNE, which is shot and projected in wide screen with surround sound.

KONELĪNE: our land beautiful is a cinematic poem that cuts through the rhetorical roar of our times. It’s turning heads and changing minds. Don’t miss it.  96 mins with conversation to follow.

 

KONELĪNE: our land beautiful is a Canada Wild production, produced in association with Telefilm Canada and the Rogers Group of Funds through the Theatrical Documentary Program; Super Channel; Canal D, a division of Bell Media Inc.; Knowledge Network; The Canada Media Fund; developed in association with The National Film Board and Creative BC; produced with the participation of Rogers Documentary Fund; the Shaw Media/Hot Docs Completion Fund; the Canadian Film or Video Tax Credit; and the Province of British Columbia Film Incentive BC.

Mar 03 | The Quants of Wall Street: Risk and the Ethics of New Financial Technologies

Who wins and who loses as Wall Street transforms from sweaty bodies on the stock exchange floor to quants and physicists designing swift, sleek stealth modes of moving financial data at a distance? What new opacities and inequalities accompany the rise of new financial technologies—such as Bitcoins, roboadvisers, and laser-linked data centers — the new coin and conduits of financial realms? The Science and Justice Research Center in collaboration with the Center for Analytical Finance and the Sociology Department host a discussion with industry, academic and NGO leaders on these critical questions about who benefits and who loses in the high tech worlds of today’s financial markets.

Sherry Paul CFP®, CIMA®, and CRPC®, Senior Vice President, Wealth Advisor, UCSC Alumna

Daniel Friedman, UCSC Distinguished Professor of Economics, Author of Morals and Markets

Anne Price, Program Director of the Closing the Racial Wealth Gap Initiative, Insight

Moderated by Joe Klett, Visiting Professor of Sociology, UCSC and Nirvikar Singh, Director of the Center for Analytical Finance, Distinguished Professor of Economics at UCSC.

Co-Sponsored by the Blum Center, Center for Analytical Finance, Center for Labor Studies, Cowell College, Re-Thinking Capitalism, and the Sociology Department.

12:00-1:45 PM | Engineering 2 room 180

"The Quants of Wall Street: Risk and the Ethics of New Financial Technologies"
SJWG Rapporteur Report
3 March 2016
Critical Listener Report by Andy Murray, Sociology

Sherry Paul CFP®, CIMA®, CRPC®, Senior Vice President, Wealth Advisor, UCSC Alumna

Daniel Friedman, UCSC Distinguished Professor of Economics, Author of Morals and Markets

Anne Price, Program Director of the Closing the Racial Wealth Gap Initiative, Insight

Moderated by Joe Klett Visiting Professor of Sociology at UCSC and Nirvikar Singh, Director
of the Center for Analytical Finance, Distinguished Professor of Economics at UCSC.

Co-Sponsored by the Blum Center, Center for Analytical Finance, Center for Labor Studies,
Cowell College, Re-Thinking Capitalism, and the Sociology Department.

This Science & Justice Working Group event was a relatively large affair, consisting of three
panelists and two moderators. Its attendees filled the large room, meaning there were too many
folks for the usual Science and Justice Research Center introductions. The participants varied in
their backgrounds. The first, Sherry Paul, is a UCSC alumna and a wealth advisor who works on
Wall Street. The second, Daniel Friedman, is a Distinguished Professor of Economics at UCSC.
The third, Anne Price, works out of Oakland for the Insight Center for Community Economic
Development, where she directs an initiative to address the racial wealth gap. UCSC faculty
members Joe Klett, Visiting Professor of Sociology, and Nirvikar Singh, also a Distinguished
Professor of Economics, served as moderators. The event was put on by a larger-than-usual
number of co-sponsors, showing that the matters of concern—wealth inequality and the winners
and losers of high tech finance—speak to many audiences. Jenny Reardon, Director of the
Science and Justice Research Center, provided some more specific framing questions in her
introduction: are the instruments and intricacies of finance capital too complex to understand? Or
are we simply not looking at them closely enough? If the latter is the case, what could cause us to
start looking, if such a major event the 2007-08 financial crisis wasn’t enough of an impetus?
After all, multiple people in the room had personal stories about home ownership and loss of
value suffered as a result of the crisis.

Sherry Paul opened with a few jokes about her time at UCSC and how she found her way back (a
story that, like the financial crisis, was linked to disaster and misunderstanding) before moving
into the meat of her talk. Paul discussed the democratization of financial access and situated her
role as a financial steward who helps to protect individuals and families from the risks of
markets. Nonetheless, she talked about her move into finance capital as moving “into the belly of
the beast” and to “the dark side.” She spent a lot of time focusing on the “humanity” aspect of
finance, rather than the “math,” noting that the latter is much easier to learn. She compared
Silicon Valley to Wall Street, noting its lack of inclusion of women and people of color, and
suggested that high tech finance, in a sense the marrying of Silicon Valley and Wall Street,
represents a second iteration of the Industrial Revolution. Ultimately, her main points were about
restoring and managing the human element of finance, better managing human behavior around
investment rather than turning to robotic financial advisers. In defense of what amounts to an
improved market rationality, she asserted that “markets tend to revert to the mean no matter what
point they’re at in an industrial revolution.” Nirvikar Singh followed up on Paul succinctly,
affirming that “technology is not a substitute for ethics.”

Daniel Friedman attempted to summarize “the good, the bad, and the ugly” of markets, asking
what they do and don’t do well, and how financial capital instruments change things. First, he
asserted that markets scale up well and that they aggregate their participants’ resources and
information. However, markets can “go bad” when cheating, exclusion, currying favor, and
buying influence occur. Friedman asserted that this can happen very easily, and was in fact
dominant in markets until about 200 years ago. Markets, he argued, are also prone to bubbles and
crashes. “The ugly” is that because of these tendencies, markets must be regulated, but this
impedes both “good” and “bad” finance. He talked about financial instruments that increase the
efficiency and scalability of trading at the expense of personal connections, arguing that such
technologies may increase market instability. He argued that changing the way in which time is
measured—“making time granular in a different format”—could solve some of the issues with
such high-frequency trading. He went through his final bits of advice quickly, advocating “smart
regulation” and proper incentives.

Anne Price began her talk by noting that she was “probably going to be the oddball.” Her
discussion focused on accumulated, structural inequalities. These racial inequalities mean that
simply guaranteeing access to financial markets is insufficient if greater wealth equality is indeed
the goal. She framed the push for racial wealth equality as about “movement building” and
“pulling the curtain back.” She portrayed finance capital as a siphon deliberately designed to take
wealth from people. Metaphors and language were very important to her framing of markets, and
she insisted that language that grants agency to “the economy” obfuscates how “people create
and make deliberate changes to the economy.” She argued against viewing economics as
something that just happens, and instead viewing it as a series of choices, often motivated by
emotion rather than facts. Price received loud applause at the end of her talk, the loudest of the
event.

During the questioning, each of the panelists solidified their positions. In response to a question
from Nirvikar Singh about robotic financial advisers, Sherry Paul argued that she was against
them because they would deepen existing inequalities, allowing people to capitalize on a lack of
trust. She again argued for changing the way people approach markets and advocated having the
“greedy investor [not be] the assumed and presumed definition.” In response to a question from
Joe Klett, Dan similarly reasserted that there needs to be an ethical foundation for finance
capital, or it will not work—though it was not entirely clear what “working” meant in this
instance. Returning to discourse, Anne Price lamented that the housing crisis was a missed
opportunity to talk about the roles of the government and personal responsibility in markets.
The transition to audience questions made it clear that there was a notable tension between a
more favorable, optimistic view of markets—such as that espoused by Sherry Paul and Daniel
Friedman—and those who made the argument that inequality is an inherent feature of a market
system—as Anne Price did. This tension was the most notable of the event, as most of the
audience questions came from sociology graduate students and professors. After noting the
growing inequality in Silicon Valley, a few audience members asked if there was an inherent
logic to markets that means that they require the existence of an underclass, or if the problems
could be fixed through some form of regulation. These questions were greeted with an
acknowledgement of their scope, observations that time was limited, and laughter. This really
exposed the rift in beliefs about markets, made all the more clear when a sociology graduate
student pointed out that in in order for markets to “always recover” as Paul had asserted they do,
they require intervention in the form of taxpayer money. “Is the market becoming a religion?” he
asked, echoing Price’s earlier points about the importance of discourse—in this case about faith
in the ability of the market to “recover”—and about paying attention to the actual economic
decisions that people make.

These themes, of the logic of markets, and the role of individual agency and action versus
economic structure, proved to be the sticking points. These points were reiterated in the brief
closing statements that each panelist made. Price most walked the line between individual
agency and inherent logics, paying a great deal of attention to longstanding structural
inequalities, while also emphasizing the choices that people deliberately make to change the
economy. Paul, on the other hand, argued that there is no inherent logic to markets, that they are
merely “systems being created by people.” Despite this, she also acknowledged that capitalism is
fundamentally selfish, but returned to market optimism by asserting that we need to figure out a
way for “selfishness to allow us to work together.” Friedman seemed to err more on the
structural side, finishing by saying that markets could potentially function well and stay in
recovery for a long time, but that it was the nature of markets that there would be periodic crises.
While we ran out of time on this particular day, these tensions between the agency of individuals
and institutions, structures, and logics—longstanding in the social sciences—can provide plenty
of fodder for future conversations: about how people make markets and how markets make
people, and about what kinds of futures the new technologies of finance capital are helping usher
into existence.

Broadening Participation in Science and Engineering: Social and Intellectual Diversity

At this panel discussion, we will discuss how cultural values shape what research questions are asked and how research is conducted. Science and engineering have long been portrayed as merely merit-based domains, or, as historians of science have called it, a ‘culture of no culture’. The demographic within these fields is commonly viewed as unrelated to the quality of knowledge produced, and therefore only a concern in so far as funding agencies mandate it to be. Drawing on specific examples we will examine how research questions change depending on who is asking them, teasing apart the complex relations between research agendas and the socio-cultural identities of scientists and engineers. Investigating these questions will contribute to a better understanding of the importance of diversity within STEM fields. Furthermore, a shared examination of the experiences of inclusion and exclusion will help develop a better grasp of how to pursue social equity within science and engineering fields. Finally, it will also produce insights about what kind of knowledge is produced and for whom.

Moderator:

Ruth Müller a postdoctoral research fellow at the Research Policy Group, Lund University, Sweden and lecturer in Gender Studies, Biology & Science-Technology-Society, at the University of Vienna, focuses her research on the relations between research policy, institutional frameworks and scientific work practices, currently in the fields of climate science and epigenetics. Müller is interested in critical reflection of contemporary academic work practices and social movements in this area, such as the slow science movement. Dr. Ruth Müller joins UC Santa Cruz for a second Visiting Scholarship with the Science & Justice Research Center.

Panelists:

Faye Crosby, Provost of Cowell College, Chair of Council of Provosts, and Distinguished Professor of Psychology at UCSC specializes in social justice. Her research interests looks at the relation between objective (i.e., consensual) and subjective reality; she has looked at individual attitudes in the context of social change and stability. Crosby's current work investigates the bases of people's reactions to affirmative action and has launched a new series of studies on how people can undertake non-revolutionary changes in rules that come to be revealed as unfair. She is also examining other ways, such as mentoring, of enhancing the peaceful evolution of work organizations.

Barbara Gee, has 35 years of experience in the computer industry, where she has held leadership positions in all functional areas. She has worked for HP, Silicon Graphics, TiVo, and other well known tech companies. In addition, Barb has served in leadership roles in the non-profit sector (including Huckleberry Youth Programs), and prior to joining the Anita Borg Institute was the Executive Officer of Human Resources for the Oakland Unified School District. She has also served on the San Mateo County Commission on the Status of Women, the Board of Global Exchange, and is an Advisory Board member of the STEM Academy at McClymonds High School in Oakland California. Barb currently serves as the Vice President of Programs for ABI, where she oversees the execution and development of programs focused on increasing the participation of women in technical roles, with the belief that when the inventors of technology mirror those who use it, society gains. Barb received her B.S. in Electrical Engineering and Computer Science from UC Berkeley, and her Masters in Management at the Sloan School of Management at M.I.T.

Joan Haran, a Research Fellow at Cesagene (Cardiff Centre for Ethical and Social Aspects of Genomics and Epigenetics) at the Cardiff School of Social Sciences whose research revolves around gender, representation and technoscience. She is particularly interested in the policing of boundaries between science fact and science fiction. Haran has a BA (Hons) in Literature and History from North Staffordshire Polytechnic, an MA (Dist) in Gender, Society and Culture from Birkbeck College, University of London and a PhD in Sociology from Warwick University. She co-authored the monograph Human Cloning in the Media: From science fiction to science practice (Routledge 2008) which drew together media, cultural, and feminist technoscience studies preoccupations and methodologies to document the symbolic and material labor of making genomics in the media.

Melissa Jurica, Associate Professor of MCD Biology at UCSC oversees the Jurica Lab, a research lab at UCSC working to understand the structural and functional analysis of spliceosomes a tiny molecular machine found in all human cells, as it plays a critical role in how our genes encode for an organism as unique and complex as a human being. She has recently become the director of the UCSC Initiative to Maximize Student Development program, which supports both undergraduate and graduate students in an effort to increase diversity in biomedical research.

Thanks to Women in Science and Engineering (WiSE) for facilitating the following recordings of the event:

Broadening Participation Video: Part 1, Part 2, Part 3

Engineering 2, Room 599 |  May 14, 2014

"Broadening Participation in Science and Engineering: Social and Intellectual Diversity"
SJWG Rapporteur Report
14 May 2014
Rapporteur Report by Lizzy Hare
At this Science & Justice Working Group Event, Lund University postdoctoral research
fellow Ruth Müller moderated a discussion about how diversity within the STEM fields might be
expanded. Panelists Fay Crosby (Provost of Cowell College, and Distinguished Professor of
Psychology at UCSC), Barbara Gee (Vice President of Programs at the Anita Borg Institute for
Women and Technology), Joan Haran (Research Fellow at the Cardiff Centre for Ethical and
Social Aspects of Genomics and Epigenetics at the Cardiff School of Social Sciences), and
Melissa Jurica (Associate Professor of MCD Biology at UCSC) shared their experiences and
specific examples of inclusion and exclusion within the STEM fields. Science & Justice
Research Center Director Jenny Reardon welcomed participants and the audience, adding that
the topic has been appearing more frequently in recent news media, and that she’s interested in
the rise of this concern during a time when there doesn’t seem to be a lot of progress being made
towards equity and inclusion.

Ruth introduced the discussion with a reminder that issues of inclusion have always been
a part of scientific knowledge production. In the early days of the experimental sciences,
scientists distinguished themselves by portraying themselves as the “modest witness” who could
transcend the body to make observations of the world that were not occluded or biased by the
researcher’s perspective. Crucial to the operation of these laboratories were those whose
contributions could not be counted as objective science, due to their non-white, non-male, nonbourgeois
bodies. When multiple others began to demand access, many of those who were most
successful embodied the “neutral” characteristics of white, male, bourgeois science as best they
could, effectively creating a science that could claim inclusion while still ignoring the
contributions of other ways of life. Müller asks us if it is perhaps time for science to accept that
it only allows in a select few, and that the traits that are seen as necessary for a good scientist
exclude a number of potentially excellent thinkers and scholars.

Faye Crosby began her contribution by explaining that she believes strongly in the value
of positivism, and that she believes this value is exclusive of gender. In her experience, there has
often been a pretense of using standards of merit, yet non-scientific values are able to creep in.
She used a social psychology study on affirmative action as an example. In that experiment,
white male subjects were asked to review applications for a single prize. They received
information about a person of color, or a white person. In half of the situations the persons of
color had low test scores but excellent letters of recommendation, while in the other group, it was
reversed. The reviewers showed a clear preference for white candidates, and justified it either
with the letters of recommendation or the test scores, depending on the case. Either way, they
claimed to be fair and unbiased in their decision making process. Faye used this example
because she wants to make the case that we should not change the way we do science to make it
more “feminine”, but rather, we should make it more scientific and make sure that the same rules
apply all over. This will require taking notice of all of the small structural factors that make it
easy to continue to enact practices that keep women down.

Barbara Gee discussed her work at the Anita Borg institute, and emphasized how the
institute uses scientific research to support the goal of the foundation. That research has helped
them to show that including women technicians and engineers in the research and design of a
product is both good social practice and good business practice, because it has been shown to
boost sales and yield more successful products. The Institute has had some success in fostering
relationships between women in computing and inspiring confidence, but they are still working
on how to change the culture within companies. Gee said that this is especially difficult because
so much of the problem lies in unconscious biases.

Melissa Jurica echoed many of the same sentiments that Crosby and Gee had shared with
the Working Group. Jurica explained that in her experience much of the problem lies in the
values that scientists are expected to share and to cultivate. These values might not promote
minority representation in science, and may even actively work to discourage it. She mentioned
aggression, self-promotion and skepticism in particular. For her, self-doubt is a form of
skepticism that she thinks might ultimately be beneficial to science, but it tends not to be valued
in laboratory settings. Because these values are seen as being neutral, it is hard for scientists to
recognize that privileging these values often means privileging certain kinds of people. Like
Faye, she encouraged the Working Group participants to utilize implicit bias tests as a way to
help people understand where their own prejudices may lie. In closing, Jurica also expressed
some frustration that women scientists are asked to participate in panels about diversity, but that
such talks often end up preaching to the converted, as it is too easy for those in majority
positions to ignore them. It is worth mentioning that in a full room, there were only two men who
were not directly affiliated with the Science & Justice Research Center.

Joan Haran brought the conversation outside of the context of the lab by discussing the
representation of women scientists in the media. Why, she asked, are women scientists in the
media so highly stereotyped? At the same time, she reminded us that realistic representations of
women scientists might not be desirable either. Fewer than 13% of professional scientists are
women, so if representations were accurate, their voices would be heard even less frequently.
But if representations of women scientists shift towards being aspirational, perhaps the better
move would actually be to disentangle the categories in the first place, and make space for
representations of scientists who happen to be women, or women who happen to be scientists.

One of the main concerns voiced during the discussion period was why there are fewer
women Computer Science undergraduates in the US now than there were in 1988, which was the
peak. Some seem to think that this could be because men present themselves as more confident
and self-assured, which leads women to believe that they are behind. Ruth asked if this might be
because we have myths about what science is as an activity, and that means that we tend to deemphasize
the importance of group effort in advancing scientific knowledge. Lauren asked the
panelists what could be done to make women more confident, and Faye responded by saying that
she does not want women to become as confident as men, but rather, she wants men to become
as humble as women. Melissa reminded us that all of these issues become more problematic
when there is a large gap in the gender divide in the workplace.

The matter of care and caretaking was also addressed in the discussion period. Melissa
attributes her ability to be successful as a scientist in part to her spouse who is willing to stay at
home. This caused others to wonder about the invisible labor of caretaking that has allowed
male scientists to be successful over the years.

In going forward, the Working Group is optimistic that the knowledge about gender gaps
and inequalities in science will be useful in making changes in the future, but there still seems to
be some concern around how to enact change in academic and private institutions.

Trust in Genomics: A challenge for scientists and ethicists alike

Access to data and the quality of data depend partially on the quality of trust between physicians, researchers and many different patients.  When trust breaks down, patients and research subjects may request that their samples be withdrawn, or they may not provide samples and data in the first place. Technological developments that enable biomedical institutions to bank vast quantities of tissues and data today introduce new challenges to this critical project of creating and maintaining trust.  Any tissue now given for research or routine medical care technically could be used for an indefinite amount of time for entirely unforeseen purposes. In such a situation, it is hard to say that anyone understands what they are consenting to, even the researchers and physicians collecting samples and running trials.  Under these conditions, trust based in mutual understanding faces new challenges.

How to address these novel challenges will be at the center of the Science & Justice Working Group meeting on April 16, 2014, “Trust in Genomics: A Problem of Knowledge and Ethics”, 4:00-6:00PM in Engineering 2 599 on the UCSC campus. In this discussion, respected medical geneticist Wylie Burke (University Washington) and cultural anthropologist and bioethicist Barbara Koenig (UCSF) will share their experiences working with biobanks, researchers and patients to build better data sets by attending to matters of trust and respect.

Dr. Barbara Koenig, professor of medical anthropology and bioethics in the UCSF School of Nursing, is the co-Director of a newly launched research institute at UCSF dedicated to understanding the ethical, legal and social implications of translational medical genomics, The Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G). By bringing together a broad, multidisciplinary range of expertise, CT2G is endeavoring to ask, and answer, questions about how genomic information will be used in a manner that benefits researchers, patients and broader publics. “A decade after the human genome was fully mapped,” Koenig argues, “figuring out how to translate genomic findings into prevention and clinical care has become a public health priority.”

Dr. Wylie Burke, Professor of Bioethics and Humanities at the University of Washington and Principal Investigator of the University of Washington Center for Genomics and Healthcare Equality, co-authored an article in Science (Trinidad et al., 2011) that highlighted the potential benefits of approaching consent (and re-consent) as an opportunity to engage with donors beyond legal formalities. She and her co-authors examine the downstream consequences of not thoroughly consenting donors for the use of their biological materials and data. Drawing on cases that have appeared in the headlines, such as the sequencing of the HeLa cell line, they examine the wide range of opinions about how best to protect patient privacy and dignity in an age when even experts cannot anticipate how biological samples might be used in the near future. In the article, they propose that “researchers and IRBs consider how the informed consent process could be used to foster respectful engagement, rather than merely mitigate risk.”

This discussion is the second in a series of discussions that the SJRC is hosting on Data Justice (see Science and Justice in an Age of Big Data: A Conversation with Peter Yu and David Haussler for a description of the first meeting held on January 22, 2014).  The meeting is co-sponsored by the Department of Molecular, Cellular, and Developmental Biology, the Center for Biomolecular Sciences and Engineering, and the GENECATS and CANCERCATS research groups.

April 16, 2014 | Engineering 2 Room 599    

 

"Trust in Genomics: A challenge for scientists and ethicists alike"

SJWG Rapporteur Report

16 April 2014

Rapporteur Report by Lizzy Hare

This event was the second in a series of discussions that the Science & Justice Research

Center is hosting on Data Justice. This working group meeting brought medical geneticist Wylie

Burke (University of Washington) and cultural anthropologist and bioethicist Barbara Koenig

(University of California San Francisco) into conversation with Science & Justice Center

Director Jenny Reardon and David Haussler (Director of the UCSC Center for Biomolecular

Science and Engineering). Drs. Burke and Koenig shared their experiences working with

biobanks, researchers and patients to build better data sets by attending to matters of trust and

respect. Matters of trust were central to the first Working Group meeting on Data Justice that

was held in January of 2014. The goal of this meeting was to extend that conversation and

explore those issues more fully.

Jenny Reardon’s introduction provided an overview of some of the concerns that the

Working Group hoped to pursue with the Data Justice series and this event in particular.

Wylie Burke started the discussion by talking about the University of Washington’s

(UW) “biotrust” efforts. They are seeking to collect clinical samples and health information as

patients receive care at affiliated institutions. UW consulted with ethicists during the

development of this biobank and the result was an opt-in process rather than the opt-out format

that most institutions use. In order to explain how UW’s biotrust efforts are distinct from others,

she explained the case of a five site research consortia that was seeking to understand to what

extent data in electronic records could determine phenotypes for genetic research. Once the

research was completed, the funder required that the health and genomic data be sent to a central

repository. UW was the only one of the five sites where the Institutional Review Board (IRB)

required that they seek additional consent from patients, arguing that sending information to a

federal repository was of a different order of magnitude the research that had been specified in

the original consent forms. Burke and her colleagues were able to gain extra funds to survey

people about how they felt about the reconsent, and overwhelmingly they wanted to be asked and

did not see it as a nuisance.

Barbara Koenig wanted to turn the conversation away from trust and towards

trustworthiness, which places the onus on the institution to be worthy of the trust of patients and

the community. While working at the Mayo clinic, Koenig was a part of the same research

consortia as Burke. The Mayo clinic had used a 3-way checkbox consent form that had been

considered sufficient by the IRB, but the clinic ultimately decided that the form was insufficient.

The clinic took the issue to their community advisory board, and that board decided that it was

acceptable notify patients and allow them to opt out rather than go through the process of

reconsent. Koenig referred to the act of consulting with a community advisory board as

“deliberative community engagement”, and the strategies are based on deliberative democracy.

The goal is to bring individuals who represent the community together to discuss data

governance. This method will not replace informed consent, but will enrich it, because consent

alone might not be sufficient to deal with future obligations and findings.

David Haussler joined the conversation and voiced his concern with establishing trust for

large, global alliances through local efforts like those that Koenig and Burke had discussed.

Haussler believes that large data sets collected through international collaborations are necessary

for understanding complex problems such as cancer and inherited diseases. He was excited by

the conversation at this meeting because he’s been working as a part of the Global Alliance (an

international effort to share genomic data) and they have been having a tremendous issue with

establishing trustworthiness. Burke and Koenig reiterated that trust needs to start locally, and

that local procedures need to cover rules about access to data, even if that information will be

used as a part of a global research effort.

The central issue seems to be a lack of agreement on how much data could be shared, and

where that information would be stored. Restricting access might make the process and the

institutions involved more trustworthy for community members and patients, but restricting

access prevents creativity and potentially groundbreaking uses, as well as raising concerns about

who is able to determine access to the information. Jenny mentioned the adage “information

wants to be free”, but our worlds have borders and those borders allow us to make decisions

about which values count in a particular place. Jake Metcalf reminded us that there is a second

part to this famous adage, and that is that information wants to be free, but it also wants to be

expensive. In our quickness to speak of information as something that has a will and desires to

freedom, we tend to ignore the infrastructures that are required to share that information and to

allow its use.

What would a Neanderthal think of Disneyland?

I was trolling the Internet last week, looking for articles about Neanderthal cloning, and came across a rather bizarre claim about ethics and science. Why was I looking for material about Neanderthal cloning? Ed Green, who ran the bioinformatics portion of the Neanderthal Genome Project, was hired by UCSC last year and is visiting my bioethics class next week.Continue Reading What would a Neanderthal think of Disneyland?

Best-Selling “Science and Values”

The Daily Show With Jon Stewart Mon – Thurs 11p / 10c
Sam Harris
www.thedailyshow.com
Daily Show Full Episodes Political Humor Rally to Restore Sanity

Last week, Sam Harris, the author of the best-selling book, The Moral Landscape: How Science Can Determine Human Values, appeared on the Daily Show. Not even Jon Stewart could make this stuff funny. In this country, we desperately need less impoverished imaginaries about science and religion.Continue Reading Best-Selling “Science and Values”